I love the wallpaper in our study.
I wasn't asked to complete this online questionnaire, but it appears that the results mirror my experiences. Check out this interesting and very readable study published online October 23, 2012 in the Journal of Medical Internet Research:
Communicating the Experience of Chronic Pain and Illness Through Blogging
Reviewed by Nanhua Zhang
Pamela Katz Ressler, RN, MS, HN-BC, Ylisabyth S Bradshaw, DO, MS, Lisa Gualtieri, PhD, ScM, and Kenneth Kwan Ho Chui, PhD, MS/MPH
The words of a survey respondent, “First I was helped, now I am helping...a reminder that I am part of the world,” describe the experience process that bloggers in this project reported. Perhaps the process of communicating the experience of chronic illness and pain through blogging may be one method to assist in moving toward a more complete, holistic model of health and healing by allowing individuals with chronic illness and pain to regain a place in the world.
I have often urged others to join the blogosphere, for many reasons, most of which are listed in the above survey results. But in thinking about my motivation for slogging through my daily blogging, I hadn't considered what the authors so eloquently state above: ".....by allowing individuals with chronic illness and pain to regain a place in the world."
How true. With the onset of a chronic, life-changing illness, one of the biggest challenges that anyone faces is dealing with the isolation and withdrawal from what was once considered normal: friends, hobbies, jobs, and family. I can connect with others around the globe through my blog, and it's helped me find my NEW normal.
You can read the rest of this excellent study here.
3 comments:
Julia,
Your blog has helped educate me about my illness, not only in methods of treatment, but, in explaining the myriad of symptoms common to many Sjögrens patients has helped me understand and accept what is happening to me in a way no physician ever could. I have a wonderful team of doctors, but it's helpful to educate ourselves so we can work with them to have the most productive lives possible.
As an example, I'm going to look for your post on oral health now, before I head to the dentist!
Thank you for sharing your struggles and research!
Jody
I totally agree with this...if it had not been for your blog...was probably the first I found, I dunno what I would have done. It helped me connect with others and better understand what was happening to me. The best part though was seeing that you have been able to have a good life in spite of it - enjoying your family, friends and pets!Thank u Julia!
I'm new to Sjogrens and new to your blog. I love your insight and the educational information you provide. I look forward to reading your posts as it definitely keeps me from feeling so alone in this disease.
Thank you!
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